What Should We Tell the White House?

whitehouse.jpgI’d love your feedback on this question.

Last Friday morning, I met with Aman Bhandari in President Obama’s Chief Technology Office. It was an intense 45 minutes! Aman is coordinating
the Community Health Data Initiative,
which involves taking the datasets that HHS has recently released to the
public, incorporating other datasets through partnerships, and inspiring
a crowdsourced app development movement to help make sense of the data -
with the ultimate goal of having a positive impact on national health.

Most of the data they have released is only as detailed as county
level. We spent about 10 minutes talking about personal informatics and
the Quantified Self. I suggested that the Initiative could become more
powerful and widespread in two related ways: 1. by opening up more
granular data and 2. by looking beyond only corporate partnerships and
tapping into the mass self-tracking that engaged citizens are doing.

Aman recognized the trend and basically said “Great, I’d love to.
Tell us how to do it.”

Win!! :)

Then we got into a discussion of the future of mobile
health
, open science platforms, crowdsourced health data, and health policy.

The Quantified Self community has an
opportunity here to provide a list of recommendations to the White House
about how to engage with the self-tracking movement, possibly including
the creation of a citizen data commons
. I’d love to discuss further with anyone interested, and hear
your thoughts on how we can best respond.

On a side note, I was surprised by two things:
1. Obama’s
strategy for innovation has generated a real startup feel in the
government – there are small, scrappy, energized, no-budget teams doing
rapid experiments to see what works and how to engage with the public.
They have more questions than answers. They are looking for ideas,
partners, and people interested in helping out or serving on committees
to help maximize the impact of this new openness. I grew up in politics,
with my mom serving as the Canadian equivalent of state representative,
and I’ve never seen anything like this.

2. The stark lack of awareness of basic QS concepts in the general
population – I admit I live in the Silicon Valley bubble, but when the
asthma inhaler tracker
was demonstrated at the Community Health Data
Forum event, there was actually an uproar of laughter from the
audience, because people had never imagined anything like that to be
remotely possible. We’re definitely still way out on the fringe, even in
highly educated circles.

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11 Responses to What Should We Tell the White House?

  1. vanderleun says:

    “…. the impact of this new openness.”
    Oh yes, openness and transparency everywhere you look in this administration. All brand new and… look shiny!

  2. Gary Wolf says:

    Thanks Alex – what an interesting, important report. We had a great time with Ian Li at our brown bag lunch/HCI seminar last week. Maybe we could do another one or two to invite people to discuss/contribute to QS recommendations to the White House.

  3. thumper says:

    A related article showed up on Slashdot today, about how the apps resulting from gov’t contests are pretty but maybe not so useful, and how DC will stop having contests: http://yro.slashdot.org/story/10/06/07/0350227/Govt-App-Contests-Are-Cool-But-Are-They-Useful
    A citizen data commons is a nice idea, but can it be trusted without some sort of ID system? What if I purposefully upload bad data? Is there a way to prevent me from doing it again? Given that I have trouble managing my own personal data, I wonder if it’s possible to create a usable data commons just yet, especially when details (like circumstances of measurement, or even just the specific device) can matter so much on how to interpret data. As a simple example, we’ve seen on this blog that blood pressure readings take about 15 readings to “settle down”, so how useful are my readings? And if you want to build an app, you probably need to know more information like my age and location.
    Privacy aside, I think a data commons is a neat idea. It seems like Google Health could have a “opt in to the data commons” checkbox, and generate more data than a grass-roots data commons might.

  4. Alexandra Carmichael says:

    Thanks, Gary! What a great idea to have smaller brown bag lunches in between meetups. How about one the week of July 5 to talk about White House stuff?

  5. e-Patient Dave says:

    HEY! Valley people! I’m gonna demand we use our infrastructure to have brown-bag lunches with multi-cam Skype or something. We on the other coast want in!

  6. Alexandra Carmichael says:

    Awesome idea, Dave! What if we have a live online Twitter hashtag going at the same time, like #qslunch, where one person can record what is being said at the lunch, and everyone in Twitter-land can participate virtually.

  7. e-Patient Dave says:

    The #qslunch idea sounds great, except I wouldn’t limit it to one person!
    And hey hey hey, could we Ustream it? Still 100% informal, as brownbags should be – but then the event can be harvested by people who aren’t free.

  8. Alexandra Carmichael says:

    Right, well I meant at least one person can be responsible for faithfully tweeting, and of course everyone is free to join in.
    UStream is an interesting idea – let me check into whether it will work with a basic laptop cam. Thanks for your enthusiasm, Dave!

  9. Brigitte Piniewski says:

    QS is succeeding in the core areas that Clay Shirky highlights in his review of the science of mass participation: QS is lowering the barriers to participate and providing a compelling reason to share data. A citizen-driven and co-designed data commons offers a plausible promise of significant benefit as we all can learn from the health experience of others.
    A good starting point may be activity tracking as this is relatively benign yet high yield health data that does not require the accuracy of BP or other measures. We can paint a number of clinical senarios around the before and after picture that might help move this effort aggressively. I really like the “opt-in to the data commons” check box suggestion.

  10. Vince Kuraitis says:

    Let’s connect some dots here…
    The HITECH Meaningful Use rules require that patient health record data is shared with them in an electronic format, e.g., a patient summary record in CCR or CCD format.
    This needs to be part of QS….

  11. Alexandra Carmichael says:

    @Vince, thanks for bringing patient health data into the conversation! Let me know if you’d like to join the group of thought leaders we’re assembling to tackle this issue – http://www.kk.org/quantifiedself/2010/07/dear-white-house-our-personal.php

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